What It's Like: One family's A-Z journey through Autism

This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can last a lifetime. So-the next time you are out to dinner and see a mom letting her kid eat Poptarts or a huge mound of fries for dinner–she may not be spoiling her kiddo….that dinner may also be 8 years in the making.

F is for Food…Part 2….Behind the kitchen door…

There was this moment when my then preschool aged child and infant and I were sitting at the dinner table. I had my plate of one protein, one complex carb and leafy greens, napkin unfurled neatly in my lap, fork down after every bite. My prescribed Xanax appetizer was working as I sat there all June Cleaver-like smiling, asking about finger-paint and sandbox filled days, modeling healthy eating, modeling appropriate mealtime behavior…like I tried to every single day with little to no success. Dinner was cuisine and varied every night but there were 3 different dinner plates on the table. A1 wasn’t growing well and complained every mealtime that his stomach hurt. It would take him about 1/2 hour to eat even 50% of his meal but a big part of this was because he could not stay seated , would play with his shoes or get up to get a toy.

“Where are you going?”

“Did you have fun with your friends at school?”

“4 more bites.”

” You love buttery noodles, remember?”

“Don’t lick your shoes.”

“The timer hasn’t gone off yet.”

“I love this picture you made, tell me more about it.”

While this was going on, A2 sat strapped in to his high chair at the table with mounds of “power packed” foods. Macaroni and Cheese made with extra cheese, heavy cream and special calorie powder stirred in, crackers, whole milk with carnation instant breakfast. I was taking him to the doctor every several days for weigh ins because he was not growing or gaining weight with any normalcy. His Help Me Grow case worker taught me how to increase his calories…something that his dietician did not show me…or even suggest. He was eating about 1000 calories a day which was about the same amount I was eating to maintain pudgy and yet he still he would only gain ounces over the course of a few weeks. It made no sense. Most evenings he would sit in front of his food and not initiate eating so between my own bites I would a cajole him into letting me stick a Mickey Mouse spoon between his lips. He chewed funny. It did not look like he enjoyed eating, but generally he never fought it. But not this night. He turned his head from me and giggled at A1 who was now slowly sliding out of his chair, disappearing under the table. A2’s last weigh in he had dropped 4 ounces but we had no idea why. (Maybe I needed to put more of that Nestle Additions stuff in his milk? Should I switch to Boost? I think that has more calories. I wish he liked doughnuts!). In that moment, I experienced PXF (Parental Xanax Failure) and June Cleaver went bye bye. The underlying and increasing anxiety I was having at mealtime that caused me to medicate so I remained calm and cheery sprang to the surface and yelled “Ta da!!! Here I am everyone!!” I snapped at A1 to sit in his chair immediately and accused him of distracting his brother to the point of not eating….and his stomach is fine….so finish that spaghetti and garlic bread! I got out an assortment of spoons hoping A2 would pick one he liked better. He did not. As he sat thrashing his head from side to side and mooshing his lips together to avoid any possibility of the airplane making an emergency landing in his mouth I began bawling and begging him to eat like some bad drama actress from the 1940s. Meanwhile, A1 got up from the table to poop. What the hell was I doing wrong? Kids just eat, right?

About a year later, I dusted off that MOTHER OF THE YEAR trophy I earned that day and dropped it in the trash. A1 started losing weight and his pediatrician started taking his constant loose stools seriously. He had an elevated EMA (antibody test that is specific to gluten…as in that stuff found in spaghetti and garlic bread). After a week of no gluten he had his first normal looking poop of his life and soon after no more complaints at mealtime. A2 phased out all solid food before he turned 2 but was increasing the amount of Pediasure he drank. Within the month of being on a self-induced liquid only diet, he started sleeping much, much longer stretches, started walking and got consonant sounds. Sure, he projectile vomited 3 times a day but he seemed much happier. His head never spun around even once so we were fairly sure we were not going to have to call for an exorcism. To save money we switched to the a big box, El-Cheapo version of Pediasure. What we saved in monthly bills, we spent in clean up costs and therapy bills for A1 because the vomiting seemed to increase–as did his target range. And like fine wine connoisseurs, my husband and I decided the bouquet of El-Cheapo vomit was not as pleasant as Pediasure vomit. A1 and his hypersensitive sensory system were traumatized. (see exhibit A)

EXHIBIT A: Things he likes to smell: Perfume. Things he doesn’t like to smell: Vomit

Through deductive reasoning, I concluded that El-Cheapo brand was making it worse, we switched back and he improved. A few years later he improved even more when an integrative medicine doctor suggested he couldn’t digest dairy and thought he should be on a “pre-digested” prescription version of the same thing. “Oh…no. We had him tested, he’s not allergic to dairy…and our GI said its probably just a mito thing”. But sure enough within a few weeks of switching again, A2 stopped vomiting. Completely. And he was willing to play with and then even taste a few foods.

There is nothing more instinctual to a mother than nourishing her child. Our species would not survive if this were not the case. When your child has feeding issues it is normal to doubt your instincts, to question what you are doing wrong, how you are messing this up. Have I had to drop a few $20s into the therapy jar for later due to my own reactions? Sure. I am human and I find there has been almost nothing more unnerving than my child not eating or feeling sick when they eat but no one can tell me why. And when someone finally figures something out and they get better to start questioning EVERYTHING. Make sure you are being honest with yourself. Are you trying the best you can? Are you revisiting eating with your child? Are you trying to create a more relaxed environment at mealtimes? Can you, especially as a woman in this society put your own food issues aside? Pat yourself on the back if you can answer “yes” to those questions because your child will continue to thrive because of you. Breathe….and most importantly, enjoy your meal.